Mobility Aids

What To Consider When Purchasing Your (Or Your Child’s) First Mobility Aid – A Parent’s
Perspective

At some point, there may come a time where you or your child will need to consider purchasing a mobility aid. What to do? What to buy? Crutches? Walker? Wheelchair? Scooter? Do we really need it? What if my condition or my child’s gets worse?

Those are some of the many questions that may be going through your head. Now, we’re not medical providers, physiotherapist (PT) or Occupational Therapist (OT)’s but we’ve been down that road and here’s what we wish we knew when we started this process:

• What are my or my child’s restrictions or limitations leading me to consider a mobility aid?
• How long does this mobility aid need to last before we’re eligible for new funding? (this is super important with degenerative conditions like MPS)
• Are there mobility aids that are versatile and can meet more than one need or evolve with our needs?
• The hospital/public service waitlists are too long, I don’t think we can wait, maybe I should consider a private assessment?
• Does the aid work with our home? If not, can we make modifications soon or is there another aid that works better?
• Is the suggested aid appropriate for me or my child’s age? (ability to assemble and disassemble appropriately)
• Is aid safe for my needs?
• Is the aid too heavy?
• Will an aid improve my child, my family or my quality of life?
• Does the assessor (which is likely not going to be your doctor) know anything about my condition and the progression?
• Do I have the appropriate vehicle for this aid? Can I afford to change my car? Is there an alternative?

These are some of the questions we wish we had asked ourselves when we started this process so now, we’re sharing our journey with you in the hopes you can learn from our and the system’s mistakes.

In the summer of 2020, we saw a significant decrease in Arielle’s mobility and every time we saw medical providers, we kept being told she needs to be more active, do more physio, get stronger and it will get better. It didn’t and she no longer wanted to participate in any activities she previously did, we could barely get her out of the house or get her off the couch. Then we noticed she was even struggling to get around in the house. That’s when we bought her first cane out of our local pharmacy. We also bought her a hoverboard cart so she can play outside.

Finally, the doctors listened and realized it wasn’t just about her not being active and Arielle went for her first spinal surgery. Upon discharge, we were told no rehab or mobility aids would be needed. Wrong! We bought a geriatric walker off Amazon just to get us by while we found a private assessor that can recommend an aid. Once we found a private OT, they told us she wasn’t eligible for a walker or a 2in1 walker/wheelchair because she had corrective surgery. They did say she was eligible for a specialized stroller. So, not knowing better, we went ahead and purchased the stroller which came with painful paperwork and funding requests because it’s 5000$!

Now that was a big mistake, Arielle was 10 years old back then and wanted nothing to do with the stroller because she felt like she was a baby and frankly it didn’t promote the independence she craved. We should have advocated better.

Now, fast forward, her school PT orders a properly fitted walker for her at school. Yay! We ask the school PT to help us with the process of getting one at home. She couldn’t because her funding license was just for schools but she forwarded our request to a colleague who was licensed for home funding. Great, that PT supported the request, and we finally got a walker for the house, an entire year later. But we had to put that purchase on hold because we were simultaneously applying for a manual wheelchair (WC) and were told we may have to choose between the walker and the WC. So, we held off.

In that period, we reached out to our children’s hospital for a referral to a seating and mobility clinic for help in getting a proper WC for Arielle. We were told there was a 9 to 11 month wait before she can be assessed. So, we found a private PT, who was excellent, and she helped us out and definitely confirmed Arielle needed a properly fitted wheelchair, with a power assist (on demand electric wheel). Awesome! Someone is helping us!

We go through the process; the vendor shows us a bunch of different specs and we settle on a chair and power assist. Now the hick up is… will the government fund a portion of this because who knew a wheelchair cost over 10 000$ and they’ve already funded a stroller which is categorized as a wheelchair (in Ontario) the year prior.

Like I said, we loved the PT, because she advocated for Arielle and completed the paperwork to demonstrate why Arielle needed this chair and the walker. Funding was approved for both, and our private insurance covered the balance. A-M-A-Z-I-N-G!!

Well now, the walker doesn’t fit in any of our doorframes and it’s non-refundable… who knew these things weren’t standard. Why on earth didn’t we think of asking the PT to visit our house or measure our doors? Or why didn’t they think of that, we’re new to this.

Oh and great, the walker and the wheelchair don’t fit in our cars, it’s one or the other. So I guess we’re buying forearm crutches for the transition between the walk and the chair when we’re out in the community.

Now all this to say, 4 years and 3 surgeries later, we have a proper walker for the house (that still doesn’t fit the car but there wasn’t a way around that) and a wheelchair Arielle loves.

Now, the power assist, it’s great when it works well but it isn’t safe for Arielle’s needs (in our opinion). It resulted in one accident that could have turned out very badly and a few close calls. So, there are times when she can use it, which is more often than not, but other times when she can’t due to safety concerns.

Now, this wasn’t meant to discourage you… there is a light at the end of the tunnel. Starting the process for a mobility aid was probably the best decision we’ve ever made. We were so scared at first because we’re constantly told “if she doesn’t use it, she’ll lose it” referring to her mobility and her muscle strength.

While that is true, it’s a balancing act and now that Arielle has her aids, she’s thriving and more active than she’s ever been. She doesn’t isolate herself anymore, she has more energy, she moves around in the house, she cooks and bakes, she hangs out with her friends around town, goes out to do some errands and plays competitive wheelchair basketball.

So, if there’s one thing to take out of this is – don’t rush through the process, ask the right questions for your situation, make sure your medical team knows the current needs and anticipate the future ones and don’t stop advocating!

The Cameron and Serviss Family